AA Diet Info for SMA

Based on Families Experience

Kennedy’s Diet

Kennedy’s diet, type 1 weight 10kg, age 25 months
650-700 calories

  • 1 packet Tolerex
  • 10-12 oz breast milk
  • 2.5 oz prunes (baby food)
  • 4 oz spinach/potatoes (baby food)
  • 4 oz apples
  • 450-500 cc’s water
  • + supplements (50 mg CoQ10, 1000 IU Vit D3, 500mg Calcium; 1 capsule, 1/8 to 1/4 teas. Himalayan salt.
  • Solgar Essential Aminos; 1/2 cap branched chain aminos; 1 scoop NanoVM
  • carnitine 2x a day outside of the feed, along with a probiotic and omega 3

Her diet is basically 1 pkt Tolerex, 10-12 oz breastmilk, + three baby
foods. I literally change it up every day or two days. She gets
prunes every day, though.

This website explains the accurate amino acid diet for spinal muscular atrophy patients. For over 17 years, this diet has been used successfully in many SMA patients.Those following this diet appropriately are typically healthier and stronger than others similarly affected by SMA. Because this diet hasn't been studied by medical professionals, it is often not properly prescribed. I believe this is a disservice to SMA families striving to access all available care options for their children. This website has been established with the hope that more families can understand how to safely and optimally use this diet. Any information contained here is based on the opinion and experience of many families.